The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

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Saturday, August 25, 2007

Whenever the physical cause of an illness is not yet known, as is the case with M.E. (Myalgic Encephalomyelitis), [known in the US as CFS] it is often assumed that there is not one to be found and the sequence of steps usually followed is:

1) it doesn't exist;

2) those claiming to suffer from it are lazy malingerers, even though they have had a previously good employment record, or attendance at school and they just need to be "helped" back into work by a carrot or stick approach;

3) it must be a psychiatric illness, even though there is no previous psychiatric history and the recommended treatments are a spell in a psychiatric hospital for the most unfortunate, or some short-term psychotherapy such as Cognitive Behaviour Therapy (CBT), the first of which scars people for life, even makes some end their own life; the latter of unproven lasting benefit, for more than three or four decades.

And, still, step 4 is not considered: that is, we don't yet know the physical cause and ought to be looking for it.

When a physical or neurological cause is eventually discovered (as in the case of MS, for example, which had previously gone through the same phases as M.E. is going through now), the doctors and researchers who had resisted the idea will now say that they were acting on the best evidence available at the time - usually their own and ignoring any other that did not fit their prejudice - and the same process will be repeated for the next generation of patients with an illness not yet understood.

There are perhaps 150,000 M.E sufferers [in the UK], some diagnosed for as long as five decades, praying for researchers to learn from previous mistakes and proceed more expeditiously to step 4, well-designed biomedical research, supported by adequate funding to carry it out.

When we are young, we're taught never to make promises we can't keep. We learn that a promise is something people come to expect and plan around.

But as we grow older, we find ourselves making promises without thinking through the consequences. Sometimes we make a promise when we are under emotional pressure, and sometimes we don't have all the information we need.

We learn that our promises can have a profound impact on a recipient -- people generate expectations and alter actions based on a belief that our promises will be kept.

In medicine, promises are particularly important. In fact, promises are at the core of the doctor-patient relationship.

<snip>

In this case, the junior doctor promised -- with good intentions -- something that was not possible in our society. Patients, if they are of sound mind, need to be involved in their own health decisions. ... ethics, which require patients to make their own medical decisions.

<snip>

The family considers the problem a lack of honor and a promise not kept. The doctor blames poor communication and cultural misunderstandings.

Everyone in this case loses. The mother, because she has not been prepared for cancer and is caught off guard. The family loses trust in American doctors. The junior doctor loses the chance to remain involved in the care of a woman she liked, and she loses the chance to demonstrate the devotion she has to her patients and the privilege it is to be a doctor.

* * *

This is the problem ME/CFS patients face: doctors who lose sight of the fact that it is a PRIVILEGE to be a doctor, and allow their own ego and hubris to eclipse the patient's right to make her own medical decisions.

Instead of saying "I don't know" or even "Modern Medical Science doesn't know", they come up with theories that blame the patient, and when the wrong medication doesn't work, they blame the patient for that, too. As a result, a huge percentage of CFS patients have lost faith in Modern Medical Science. The promise to "first, do no harm" has been violated so often that they have no reason to trust any more.

I was promised "I want to help you" and relied on that promise. Yet, when I attempted to make my OWN medical decision, that I did not want to take medications I'd previously been told not to take because of prior adverse reactions, I was inevitably overruled and told to do what I was told. The notion that I might have some valid information was foreign to them; another doctor warned me that the last prescription could have been fatal if I had blindly trusted those doctors to put my health ahead of their egos.

When I asked for the treatment recommended by my former specialist (and other CFS experts), it was unreasonably refused, not because it was dangerous or experimental but because it required the doctor to re-think his position on CFS. As detailed by Dr. Greensmith, someone with a stellar history of employment was wrongly tagged as a malingerer, and a psychiatric history was invented where none existed, in order to justify handing out anti-depressants that specialists and researchers know to be totally useless against CFS. The doctor didn't bother to verify my work habits with my former employer, or my psychiatric history with records maintained by his own medical group; his own "prejudice" (to use Dr. Greensmith's word) clouded his thought process and these falsehoods found their way into my medical records to justify what the facts would not support. When two psych evaluations were sent to him stating that there was NO depression, the symptoms were compatible with physical illness, he ignored those, too.

Like the SSDI judge, that doctor only wanted to see evidence that supported his position, and anything that contradicted him was summarily disregarded. As observed by Dr. Greensmith, they "say that they were acting on the best evidence available ... their own, and ignoring any other that did not fit their prejudice." You can put tons of research materials in front of such people, and they will still insistthat they know better than people who've devoted their lives to researching the disease.

Perhaps in 1984, when the first modern CFS outbreaks occurred, it was plausible that some could argue that CFS is malingering or psychiatric. But in the next few years, numerous OBJECTIVE markers were discovered by doctors treating the patients, who diligently sought a valid reason for the symptoms (as opposed to CDC doctors, who never saw patients and outright refused to when offered the opportunity).

Anyone after 1990 who was still of the opinion that CFS is fakery was clearly oblivious to the facts demonstrated by uncommon blood tests, endocrinology, brain scans, neurological exams, etc. discovered by the researchers.

Yet, in 2000, I was still being tagged as a depressed malingerer by a man who could not get past the sexist notion that divorcees want alimony, not jobs, nor process the notion that I'd been the primary breadwinner throughout the marriage. When presented with information that The Association was recommending cortisol tests, which would be diametrically different with CFS than depression, the request for that test was ignored, making it clear that he didn't want to see proof. His colleagues similarly refused to order tests which would have documented the problems I described; at my last appointment in 2003, they were still ordering only those blood tests which should be negative in CFS, and brushing aside requests for tests which would be positive.

A later specialist, horrified by the documented failure to prescribe pain medication for a patient reporting severe pain, and sleep medication for a patient reporting severe sleep disturbance, asked the rhetorical question "what would it have hurt?" to give me a trial of the medications I told them the experts recommended. The only answer can be, it would have hurt their egos to admit they might be wrong.

Don't, like the junior doctor described by Dr. Wilkes, make promises you can't keep. The patient understands "I want to help you" to mean that you will do anything possible to get her healthy and back to work, not that your mind isclosed. If you mean "I've already made up my mind and will ignore any evidence that I'm wrong", say so, so that she can find a doctor willing to do the right thing for her, and not just protect his own ego. As he says, I "generated expectations and altered actions" because I believed the promises made to help me; if I hadn't expected that promise to be kept, I would have found another doctor whom I did believe.

The simple phrase "you'd be better off with another doctor" would've been more beneficial to my long-term health than the empty promises I got for years. And fixing my health would've gotten me back to work faster than bullying and cajoling, telling me that I can do a job which I know full well I am physically and cognitively incapable of performing to an employer's satisfaction because I have repeatedly tried and failed to do similar tasks. His prejudice led him to conclude that I hadn't tried, and wouldn't try unless I was bullied to return to work, and to ignore any evidence that I'd already lost one job and been denied dozens of others because I couldn't perform the necessary tasks.

My only mistake was in believing worthless promises from doctors at a place renowned for research who had no intention of doing the research required for open-minded inquiry and active pursuit of a physical reason for my symptoms. They must bear the responsibility of yet another CFS patient now viewing doctors with distrust. I didn't reach this point on my own.

Friday, August 24, 2007

Since a commenter has claimed that CFS can be faked be people who are too lazy to work, I refer here to three newly-published Belgian studies proving that there are biological signs proving that CFS is real. These are not blood tests which are commonly performed, and therefore, many doctors will never do them to prove conclusively that their patients are truly ill. (One of my doctors, on getting negative results on basic first-round blood tests, decreed there was nothing to be gained by doing additional testing; in fact, negative results on the most common blood tests are to be expected with CFS – those conditions must be ruled out before CFS can be considered. When I had one of the uncommon tests five years later, one which tests for infection or inflammation, the results were so "sky high" that they were assumed to be lab error until a re-test was even more "off the charts". [direct quotes from doctor’s office])

2. Not in the mind but in the cell: increased production of cyclo-oxygenase-2 and inducible NO synthase in chronic fatigue syndrome. Journal: Neuro Endocrinol Lett. 2007 Jul 11;28(4) [Epub ahead of print]

3. Not in the mind of neurasthenic lazybones but in the cell nucleus: patients with chronic fatigue syndrome have increased production of nuclear factor kappa beta. Journal: Neuro Endocrinol Lett. 2007 Jul 11;28(4) [Epub ahead of print]

Patients with chronic fatigue syndrome (CFS) suffer from immune abnormalities, such as immune activation and decreased immune cell responsivity upon polyclonal stimili. This study was designed to evaluate lymphocyte activation in CFS by using a CD69 expression assay. CD69 acts as a costimulatory molecule for T- and natural killer (NK) cell activation. The expression of the CD69 activation marker on T cells (CD3+, CD3+CD4+, and CD3+CD8+) and on NK cells (CD45+CD56+) was significantly lower in CFS patients than in healthy subjects. Patients with CFS show defects in T- and NK cell activation.

CFS is accompanied by signs of increased oxidative stress and inflammation in the peripheral blood. We found that the production of COX-2 and iNOS was significantly higher in CFS patients than in normal controls. There were significant and positive intercorrelations between COX-2, iNOS and NFkappabeta and between COX-2 and iNOS, on the one hand, and the severity of illness, on the other. The results suggest that a) an intracellular inflammatory response in the white blood cells plays an important role in the pathophysiology of CFS; b) the inflammatory response in CFS is driven by the transcription factor NFkappabeta; c) symptoms, such as fatigue, pain, cognitive defects and the subjective feeling of infection, indicates the presence of a genuine inflammatory response in CFS patients; and d) CFS patients may be treated with substances that inhibit the production of COX-2 and iNOS.

Chronic fatigue syndrome is accompanied by an activation of the inflammatory response system and by increased oxidative and nitrosative stress. Nuclear factor kappa beta (NFkappabeta) is the major upstream, intracellular mechanism which regulates inflammatory and oxidative stress mediators. Production of NFkappabeta were significantly higher in CFS patients than in controls. There were significant and positive correlations between the production of NFkappabeta and the severity of illnessas measured with the FibroFatigue scale and with symptoms. The results show that an intracellular inflammatory response in the white blood cells plays an important role in the pathophysiogy of CFS and that the symptoms of CFS reflect a genuine inflammatory response in those patients.

It is suggested that CFS patients should be treated with antioxidants, which inhibit the production of NFkappabeta, such as curcumin, N-Acetyl-Cysteine, quercitin, silimarin, lipoic acid and omega-3 fatty acids.

* * *

Yes, any applicant for Disability benefits can claim to have any condition they please, but receiving benefits is not automatic. The approval procedure is designed to verify their claims, with medical professionals reviewing the medical records, doctors confirming the findings of the patient’s own doctors, psychiatric evaluations, and a VocRehab expert evaluating the whole package to determine if the person is able to work satisfactorily (e.g., adequate attendance and production). (See footnote)

It is ironic that the doctors on behalf of SSDI and my private Disability insurance noted worse problems than some of my treating physicians, and that every one of the psych evaluations has stated that the psych diagnoses made by the MDs are wrong, the psych could find no evidence of that condition, and noted that my symptoms were those of a physical ailment because the emotional factors required for a psych diagnosis were missing. (People with fever or flu have fatigue, difficulty concentrating, pain, etc., without warranting a depression diagnosis.)

N.B. Making a claim on your Disability insurance is no more suspicious than making a claim on your homeowners or car insurance. I had a job which required me to repeat "1 person in 3 will become disabled, at least temporarily, before age 65", and after repeating it often enough, you scare yourself. I was the primary breadwinner, so it made sense for us to buy the insurance, just like it makes sense to insure your primary asset (your house) to ensure you won’t be living in your car after a fire. However, the insurance does not replace your whole paycheck – I could be earning more than twice as much as a paralegal (plus health insurance, which I currently pay for myself, and contributions to a retirement plan, which would add a substantial amount to my take-home pay); it is a help in paying the bills, but not an incentive to quit work. In the 7 years that I have been working part-time instead of full-time, my Social Security retirement benefits have gone down by $200 a month, and will continue to go down every year that I work part-time.

If that poster is correct that this blog is well-read in the medical community, then I'm glad. Maybe they'll learn something from it about things that CDC will not publicize because they contradict Reeves' psych/stress theory. My primary goal is to get my fellow patients the correct treatment so they don't wind up permanently disabled as a result of trusting doctors who use disproven/outdated treatments and don't know what's currently recommended, and so they get the tests that will help them prove their Disability claims.

FOOTNOTE:

Work Feasibility Evaluation Checklist

Program in Occupational Therapy

Washington University School of Medicine

Section 1 - PRODUCTIVITY

Quantity - amount of dependable work output

Quality - quality of dependable work output

Attendance - reporting to work on assigned days

Workplace Tolerance - remaining in the workplace for the assigned duration

Timeliness - Reporting to work and returning from breaks on time

Work Task Instructability - ability to perceive, understand, and follow work instructions

Monday, August 20, 2007

"New research announced Monday found that when human stem cells -- the blank slate of the cell world -- were exposed to a common virus they turned into fat cells. They didn't just change, they stored fat, too."

It's been noted that CFS patients tend to gain weight in relapse, which has been attributed to a change in metabolism.

I've been in and out of relapse many times. As I'm going into relapse, I'll gain weight without changing my eating and exercise habits one iota. And as I'm coming out, at least half of that weight will drop off without doing a thing about it.

So I have no doubt that my weight gain is directly related to having a virus, because before I got sick, my weight never varied by more than a pound.

"Gov. Arnold Schwarzenegger has proposed several ways to reform the health care system. Now's he's got support from a newly formed coalition of people concerned about chronic illness." http://www.tmjsociety.org/cccc.htm

Over 16 million Californians (that's nearly half the population!) have chronic health conditions.

"The group's goal is to see California's broken health care system repaired with better care for the people who need ongoing treatment for ongoing, and often progressive, conditions.

"Crisis management health care just doesn't work anymore. We need to make a commitment towards chronic care management and preventive care," said Michael Negrete with the Pharmacy Foundation of California."

And this is, unfortunately, the problem that CFS patients have run into -- there's simply not much interest in treating chronically-ill patients. Doctors like to see successes; it's depressing to deal with a patient who gets worse no matter what you do. But just like schools are obligated to provide education to even those with no hope of going to college, doctors are obligated to provide care to even those with no hope of achieving perfect health. It's part of the job, deal with it!

Another problem faced by CFS patients is doctors who attribute every symptom to the CFS. Tests which would be ordered for other patients are denied. When I finally got to a gastroenterologist and explained that although I'd met the criteria for screening years ago, including family history, the doctors wouldn't order a colonoscopy because I have CFS. Apparently, they thought that made me immune to other diseases. He muttered that he almost wished he'd find cancer so that I could sue them.

I'm hoping this new coalition gets the point across that CFS patients need care every day, not just when they've deteriorated enough to land in the hospital.